Myalgic Encephalomyelitis (ME)

Author: Gabby Klein

My thanks to advocate Eileen Holderman for her consultation on this blog post

The US government health agencies and some organizations who purport to represent people with ME (pwME) are deceiving this community by purposefully conflating names and criteria for myalgic encephalomyelitis (ME), and the government constructs chronic fatigue syndrome (CFS) and systemic exertion intolerance disease (SEID). These organizations are complicit with carrying out the government’s nefarious actions in burying a severe neurological disease, ME, which has killed and rendered hundreds of thousands of Americans severely disabled for many decades.

HHS is Adopting SEID Criteria While Cloaking with ME Name

In defiance of ME stakeholders, the Chronic Fatigue Syndrome Advisory Committee (CFSAC), ME expert doctors and researchers, advocates, and patients, the U.S. Department of Health and Human Services (HHS) has consistently refused to adopt the name myalgic encephalomyelitis with its definition created by ME experts (the latest one being the International Consensus Criteria (ICC)) for the distinct disease. HHS admits that the disease ME, as classified by the World Health Organization (WHO) as a neurological disease since 1969, exists as distinctive and unequal to CFS and SEID, yet they refuse to formally recognize it, adopt its proper name and criteria, fund it and educate about it.

Why would HHS state that ME exists yet deny care for the people suffering from the disease? There is no question that since the 1980’s there has been an HHS agency-wide effort to cover up facts about ME, including the dozens of outbreaks of ME worldwide. Once they have started on the path of erasing history, HHS cannot politically afford to change course. Unless exposed publically or challenged legally, HHS will not admit to their malfeasance of attempting to erase a disease and therefore they keep inventing new vague umbrella entities with demeaning names to cover up their wrongful actions.

Organizations Are Adopting SEID Criteria While Cloaking it with ME Name

Some organizations purport to advocate for pwME yet, deceptively, aid the government with the creation, promotion, and dissemination of faulty definitions (SEID being the latest one) and with the conflation and misusing of names. Ironically, they falsely label themselves as ME organizations when in fact they do not advocate for the disease myalgic encephalomyelitis.

These organizations get preferential treatment from the government for their partnership with them. They get funding for research projects and are rewarded with a seat at the government table. They are selected to serve on government working groups where they are in place to advise the government on policy decisions. The government also partners with film production companies or organizations to show screenings of their film.

Additionally, HHS arranges private meetings with these organizations where they can meet with high-level government officials. For example, Dr. Lily Chu, vice president of the IACFSME organization, consulted privately with Donna Pickett of NCHS/CDC (the National Center for Health Statistics – the agency is overseen by the CDC and is in charge of coding) to work on proposals for changes to US ICD coding.

Their consultation led to a presentation of their proposal in a public meeting on September 12, 2018. This ‘public’ meeting was unannounced to the rest of the “public”. Therefore, Dr. Chu was able to call in her comments and endorsement of a harmful, unscientific proposal without any challenge from the rest of the community. Sneaky much?

Classifying SEID as if Equal to ME

According to Donna Pickett of NCHS/CDC and Dr. Chu, all HHS agencies have currently adopted the untested SEID. At the same time, HHS is using the combination acronym ME/CFS – when in fact SEID is not ME nor is it CFS (this was clarified in the 2015 IOM report)!

The nomenclature deception is purposeful and really serves to confuse and conflate everything into a chaotic mess where names and definitions have lost all meaning. The government’s hope is that by the wrongful use of the ME/CFS acronym, it will lull pwME into thinking that ME is being included – when in fact it is the farthest thing from the truth.

Listen to Dr. Lily Chu state in her call-in comment at the September 12, 2018, C & M meeting that all HHS agencies have currently adopted and are using SEID.

The current attempt by IACFSME/Chu to elevate SEID by classifying it in the US ICD-10-CM under the same heading as ME – as if it is an equal neurological disease – when clearly it is not – is disturbing and dangerous because it will result in the disappearance of ME! (read blog NCHS/CDC Proposal for ICD-10-CM). Other countries should pay attention because whatever happens in the US usually is followed by other countries.

The organization MEadvocacy who has never wavered from their mission to advocate for the disease ME as defined by ME experts has taken action and submitted comments to object to the NCHS/CDC and IACFSME/Chu proposal. You can read about their submitted comments here.

Solve ME/CFS Initiative was repeatedly asked by longtime independent ME advocate and past CFSAC voting member, Eileen Holderman, on Twitter what Solve’s response to the dangerous ICD-10-CM proposal was. It was first met with silence, then with a curt reply. Eventually, Solve sent out this video featuring their CEO, Carol Head.

In this 3 minute video, Carol Head states: “We work with the CDC regarding ICD coding.” Does SMCI work with CDC behind our backs in secrecy? Did SMCI help write the current proposal for SEID to be classified with ME? We don’t know because there is no transparency in Solve’s actions and they have, to this date, not made an official statement nor revealed if they are submitting comments about NCHS’s proposal for changes to the ICD coding.

*Please note – Finally yesterday Solve ME/CFS Initiative released a policy statement where they openly admit to endorsing the IOM report. The deception and conflation continue and their statement changes nothing written in this blog.

Organizations Hidden Dissemination of SEID

MEAction, Solve ME/CFS Initiative, and Massachusetts ME/CFS & FM Association helped draft a US Senate Resolution for “ME/CFS” featuring the IOM report and its recommendations for the name SEID and the IOM criteria (read the blog Beware of Aiding in the Burial of ME!). When confronted with this betrayal, MEAction issued a clarification on June 28, 2018, deflecting blame and attributing it to confusing language (as of this date, the same language still stands).

Additionally, MEAction in partnership with #Time for Unrest has created an accredited course for continuing medical education to teach doctors how to diagnose SEID. Their course, deceptively titled Diagnosis & management of myalgic encephalomyelitis, is actually teaching doctors how to diagnose patients using the actual IOM criteria verbatim.

When ME advocates asked Jen Brea on twitter to explain this disparity, her reply was this:

When I further challenged Brea stating that MEAction is currently using IOM/SEID criteria in their educational packets to medical professionals. This was her reply:

So-Called ME Organizations Who Do Not Support ME Experts’ Criteria

I asked MEAction to endorse and promote the #pwME4ICC petition to HHS to recognize and adopt ME as defined by the experts’ criteria – ICC. They countered that they will share it once on social media but could not sign and endorse it because their organization had not come to a decision yet as to which clinical criteria they chose to endorse.

So, MEAction would not sign nor endorse ME-ICC petition, yet they gladly created a curriculum for an accredited continuing education course for medical professionals using IOM/SEID! To endorse the experts’ ME-ICC they need to go through a “community consultation” for which the timeline keeps being delayed but, to endorse and disseminate HHS/IOM’s SEID, they don’t need community approval?

I also approached Solve ME/CFS Initiative asking them to sign and share the petition to HHS for recognition of ME as defined by ICC. They promised to look into it. Three months later Solve has still not replied and have not signed or promoted the ME-ICC petition.

Why This is Important

The topic of which definition is being used for clinical and research purposes as well as correct naming is probably the most critical issue for those representing and advocating for pwME.

The distinct disease myalgic encephalomyelitis as per WHO and experts’ criteria (ICC) is in danger of being totally erased. If you suffer from ME, you will not get a proper diagnosis. Doctors in the US will only know how to diagnose SEID and will give you a SEID ICD code – even though SEID is a definition based on fatigue and 5 subjective common symptoms (with no exclusions for psychiatric conditions).

The definition of ME as per ICC is not a fatigue condition; it is rather a neuro-immune disease with most probably an infectious component. If you are diagnosed with SEID you will not get the proper testing, care, and treatments that would have been geared to a diagnosis of ME.

More disturbingly, IOM/SEID is already being used for research purposes even though the IOM was charged with creating a clinical definition. Some of the new NIH research consortia are using cohorts provided by Dr. Bateman from her clinical practice which have been diagnosed using the IOM/SEID definition.

How to Fight the Disappearing of ME

PwME need to demand change on a federal level. They can do this by joining the 5,178 people who have signed the petition so far to HHS for recognition of ME as defined by our experts’ criteria – the International Consensus Criteria (ICC). They should contact their congressional representatives telling them to press HHS to officially acknowledge their disease ME as defined by ME experts’ criteria – ICC.

PwME should also demand transparency and truthfulness from the organizations that purport to advocate for pwME. PwME should not be left in the dark about what these organizations are planning and supporting. If they are supporting SEID, that means that they are not supporting ME and should openly state so! PwME should demand that any organization that supports SEID should not use the name ME or the conflated name ME/CFS.

#PwME4ICC Are Fighting Back

Hundreds of thousands of Americans suffer from the disabling neuroimmune disease myalgic encephalomyelitis. They have suffered severely for decades. Many have died prematurely. They have lost their health, careers, income, healthcare, family relationships, and friends. On top of that, their own government health agencies refuse to properly and accurately use the experts’ definition and name for their disease. This is malfeasance of the highest order!

Some organizations who should be there for these severely ill patients are the very ones who aid in their betrayal. These organizations are financially supported by the very ill patients they purport to represent – who are often financially destitute. The organizations should be the ones fighting for these patients for recognition of their disease, myalgic encephalomyelitis as defined by ME experts – yet, shamefully – they are doing the opposite.

Activists and people with ME are fighting back against the deception and silencing tactics by HHS and organizations who are complicit with them.

Silence encourages the tormentor, never the tormented. – Elie Wiesel

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“I don’t recall anything in the IOM report that states that the term myalgic encephalomyelitis, or ME, can not be used to describe who meets published ME criteria” – Lucinda Bateman – Global Chronicle 009 p 24

The Institute of Medicine/systemic exertion intolerance disease (IOM/SEID) criteria which the US Centers for Disease Control and Prevention (CDC) is currently promoting on their website and to medical professionals for diagnostic purposes does not define the distinct disease myalgic encephalomyelitis (ME). The National Institutes of Health is inaccurately recommending the use of the diagnostic IOM/SEID criteria as one of several choices of research criteria for studies at the NIH-funded ME/CFS Consortium Centers. Some NIH-funded researchers are already incorrectly selecting people for their studies using the IOM/SEID diagnostic criteria.

The criteria for chronic fatigue syndrome (CFS-Fukuda), systemic exertion intolerance disease (SEID-IOM) and the deceptive combination ‘ME/CFS’ do not define the disease ME.

What is ME?

Myalgic Encephalomyelitis (ME) is an acquired distinct disease, recognized and defined by international ME experts (Ramsay Criteria, Canadian Consensus Criteria (CCC), and the International Consensus Criteria ( ICC). ME is classified as a neurological disease by the World Health Organization (WHO). ME has appeared in 50+ outbreaks worldwide and in sporadic form – severely disabling millions of men, women, and children worldwide. It is a polio-like disease attacking the nervous system, reactivating viruses, and causing muscle weakness and pain. It becomes systemic, eventually affecting many body systems such as the immune, endocrine, metabolic, energy systems, and the heart.

What is CFS/SEID?

CFS and SEID are government constructed vague entities defined based on the common subjective symptom fatigue. HHS has repeatedly attempted to control the narrative about this disease with creations of overly vague definitions and demeaning names. HHS hoped that with their efforts in obfuscating the scientific and historical evidence, they will accomplish the disappearing of the disease (See evidence in a document obtained via FOIA request here).

ME is not CFS

The 2015 IOM report states in its opening paragraph: “Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious debilitating conditions that impose a burden of illness on millions of people in the United States and around the World.” (ME and CFS are described as two separate “conditions” – even though ME is a distinct disease and CFS is an assortment of conditions which are based on the subjective symptom- fatigue)

The ICC definition for ME is based on neuroimmune pathology which is consistent with the neurological classification of ME in WHO. It includes specific testing to aid in diagnosis including immunological and cardiology testing.

The IOM/SEID definition does not demand any neurological nor immune dysfunction. It is a simple checklist of 4 out 0f 5 subjective symptoms common to many chronic illnesses and does not require specific testing for diagnosis.

Reasons to Insist on Recognition of ME as per the ICC:

Vague criteria such as the CDC’s Fukuda and IOM/SEID result in many people misdiagnosed with the disease. This harms everyone involved. Those who suffer from another condition will be stuck with a wrong diagnosis and wrong treatments. Those with the actual disease will get recommendations for inappropriate and possibly harmful treatments such as graded exercise therapy (GET) and cognitive behavioral therapy (CBT).

The ICC, unlike the IOM/SEID definition, does not require a 6 month waiting period for diagnosis. The sooner one gets diagnosed, the sooner they can get recommendations for appropriate treatments. We know from experience that the sooner pwME start treatments such as rest, antivirals, immune modulators, the better their chances of improvements.

Unlike the IOM/SEID which includes the symptom of post-exertional malaise (PEM), the ICC includes Postexertional neuroimmune exhaustion (PENE pen′‐e) which is a more accurate description of what pwME experience. The ICC acknowledges and addresses brain inflammation, whereas the IOM/SEID states there is no evidence of brain inflammation.

The ICC was created for both – diagnostic and research purposes. The ICC authors knew that HHS has misused the intention of previous criteria. They, therefore, took the precaution of creating a set of criteria which could be used for both. In direct opposition of what ME stakeholders were promised, HHS is already recommending the use of their newest diagnostic criteria for research purposes.

The problem with the use of overly broad criteria for research is that it creates confusing results because it is not targetting a specific disease. The lack of meaningful study results stunts scientific advances and recommendations for appropriate treatments for the disease.

The IOM/SEID authors clarified that they did not take severe ME into consideration when creating their criteria. It is impossible to accurately define a disease by omitting 25% of the most severely affected. The resulting simple checklist of common subjective symptoms in the IOM/SEID does not describe ME.

The IOM report states on page 23: “Because of the large number of results, the committee reviewed only papers published during the past 10 years with the understanding that older research is considered and cited in the introduction and discussion sections of more recent literature.” Dr. Ramsay’s important work and the critical evidence of ME worldwide outbreaks were not looked at by the IOM/SEID authors.

The ICC recommends specific testing to aid in diagnosis. The IOM/SEID does not. The lack of directed testing will impede the ability of pwME to get insurance to pay for particular tests for ME. Additionally, it will be hard/impossible to get insurance coverage for ME treatments like antivirals because the IOM/SEID criteria do not include any symptoms of viral or inflammatory nature.

What You Can Do

ME is in danger of being erased by the efforts of HHS. Please take the time to read, join the over 4,400 who already signed and sign the petition for recognition of ME as per ICC. Please share widely. If each one of you gets another individual to sign, we can double the number of signatures.

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The much-anticipated revision of CDC’s website on ‘ME/CFS’ section “Information for Healthcare Providers” was unveiled July 12, 2018. The main reason for the revision was to adopt and educate medical professionals to diagnose people using the government-sponsored clinical IOM/SEID criteria and to update the toolkit based on current scientific data.

The result of the CDC website update is full of deceptions and in many ways worse than the old toolkit for medical professionals.

Problems and Danger with Adopting and Using the IOM/SEID Criteria

ME advocates have warned that the 2015 government-sponsored IOM/SEID criteria are even worse than the failed and highly criticized government 1994 Fukuda definition. Critics of the Fukuda definition argue that it was overly broad with too much emphasis on the one common symptom ‘fatigue’. The IOM/SEID definition is even more vague. Unlike the Fukuda, it doesn’t specify exclusions which means that many people suffering from primary psychiatric and psychological conditions will get a diagnosis of IOM/SEID.

Even worse, the new criteria do not demand any neurological nor immune dysfunction symptoms! Investigators (Dr. Leonard Jason, Frank Twisk and Asprusten et al) who have looked into the IOM/SEID criteria and published papers comparing it with other definitions have warned that it does not define the neuroimmune disease myalgic encephalomyelitis (ME) as defined since 1969 by the World Health Organization (WHO) and coded under Neurological disorders as ICD – G93.3.

The IOM authors clarified this distinction as well. They stated that the entity they were defining was not a neurological one. It was a broader entity with subsets which remain to be defined. They were clearly not defining the distinct disease ME as per our international non-government medical ME experts with their 2011 International Consensus Criteria (ICC). This comparisonchart created by the patient organization MEadvocacy.org is an easy visual tool that illuminates the difference.

The danger of using the broad IOM/SEID definition is that the pool of patients diagnosed will be a muddied group. It will be harmful to those who suffer from ME as per ICC and those who suffer from other conditions for which they lack proper diagnosis. To properly treat patients one needs to identify precisely the disease they suffer from. It would be like throwing people who suffer from rheumatoid arthritis and osteoarthritis together under one rubric because they share many of the same symptoms. This conflation would be dangerous because as we know, the treatments are entirely different.

Even more alarming, ‘ME/CFS’ investigators working at NIH funded ‘ME/CFS’ consortia are currently using the clinical IOM/SEID to select their cohorts in their studies! Using this faulty criterion will cause the group to be made up of people suffering from different conditions. The results will be skewed whether searching for a biomarker or successful treatment options. It will be impossible for future researchers, who are unfamiliar with the criteria issues, to duplicate studies as they will have no way to know how to select patients correctly.

Harmful GET recommendation Without the Name Remains on Website

CDC’s previous toolkit for providers recommended graded exercise therapy (GET), stating: “Graded exercise therapy (GET) has shown to be very helpful to some CFS patients. Graded activity and exercise are defined as starting from a very low, basic level of exercise and/or activity and gradually increasing it to a level where people can go about their daily life. NOTE: the level of activity may not be the same as before the CFS diagnosis.”

CDC’s current toolkit treatment section recommends: “Patients who are tolerating their current level of activity and have learned to “listen to their bodies” might benefit from carefully increasing exercise to improve their physical fitness and avoid deconditioning Some healthcare providers with expertise in ME/CFS refer their patients to an exercise physiologist who understands ME/CFS and uses an individualized and flexible approach to advancing activity levels.” [bolding for emphasis]

CDC is in effect still educating doctors to recommend people with ‘ME/CFS’ exercise incrementally. This description is what graded exercise is, and it is genuinely devious of CDC who many in the community have hailed for supposedly removing GET from their toolkit, only to see them re-introducing it in a concealed manner. ME advocates and patients who have been on this road with CDC for decades are not surprised at their repeated deceptions. Their malfeasance has no bounds, and they will do anything to cover-up the reality of the neuroimmune disease ME which has appeared in many worldwide outbreaks and the sporadic form.

Dangers of Conflation Which Result in the Burial of ME

CDC states: “There is no consensus on whether CFS and ME are synonyms, different spectrums of the same illness, or distinct conditions.”

These words describe the crux of the problem with the government’s attempts to cover-up ME. It benefits HHS to keep it all a big, muddied, confused heap of nothing. It has been their intention from the start – to make ‘CFS’ go away. As a 1994 letter obtained through FOIA effort by advocate Craig Maupin from NIAID’s Dr. Straus to Dr. Fukuda states:

“I’ve felt for some time, Kieji, that those that have CFS are at a certain point along a continuum of illness in which fatigue is either the most dominant symptom or the most clearly articulated by virtue of impression on the part of the patient or physician that such a complaint is important. I predict that fatigue itself will remain the subject of considerable interest but the notion of a discrete form of fatiguing illness will evaporate. We would then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.“

HHS and its agencies have purposefully acted to conceal the fact that this is a distinct disease with its distinguished history. They have repeatedly misbranded (CFS, ME/CFS, SEID), misdefined (Fukuda, Reeve’s, IOM/SEID) the disease to keep the confusion going. They have also falsely combined ME with CFS as in ME/CFS to perpetuate the confusion. It’s like calling a disease lung cancer/cold!

In the same vein, HHS repeatedly refuses (in contrast with other diseases) to accept and adopt criteria created by the international non-government experts in the disease [Canadian Consensus Criteria (CCC) and ICC] which clarify and distinguish ME. With the same concealment tactic, CDC erased our experts’ criteria CCC and ICC from their resource section.

Other Tactics Used by CDC to Minimize the Disease

CDC prides itself on the use of evidence-based scientific data, yet they state on their new website “Some patients return to full function” as if that is a scientifically proven fact. Which evidence-based studies is CDC relying on when making this positive statement? I would argue that there is more evidence of people with ME #(pwME) dying from ME than fully recovering from the disease.

In their Spectrum of ‘ME/CFS,’ CDC states: “For example, patients mildly impaired by ME/CFS may be able—with careful planning and activity management—to keep a job or continue their education, participate in social and family activities, and attend to daily life.” This statement gives the false impression that pwME if managed well, can perform normal activities of life. It is a false assumption and does not ring true with pwME. For an ME diagnosis, pwME need to have extensive reductions in previous activity. Activity management might ensure that they do not aggravate their condition and avoid crashing but, it does not improve their base condition.

CDC states: “From a clinical perspective, case definitions are used to make the appropriate diagnosis and guide therapy and management. From a research perspective, case definitions are used to identify the appropriate study population. Multiple case definitions may be required for different applications and can co-exist if there is a good understanding of how they are being used.” Historically, HHS has conflated the purpose of criteria. They have used definitions whose goal was for research, in clinical settings and vice versa. ‘ME/CFS’ investigators are already using the clinical IOM/SEID definition for studies at the NIH funded ‘ME/CFS’ research consortia – despite assurances it by HHS they would solely be used for clinical purposes!

In CDC’s attempt to conceal any possibility of an infections agent playing a role in ME, they have omitted the history of ME and the fact that it appears in the epidemic for with 50+ worldwide outbreaks.

It is alarming to see this revised CDC criteria in 2018 – more than 30 years after CDC was called down to investigate the massive Lake Tahoe outbreak. The name, definition and data do not reflect the findings at Lake Tahoe nor the WHO 1969 defining ME under neurological disorders nor the 2011 International Consensus Criteria defining the distinct disease ME.

ME advocates worldwide are rightfully aligning in their fight against the PACE Trial with their recommendation of the harmful treatments of graded exercise therapy and cognitive behavior therapy. ME advocates need to do the same with CDC’s revised website which is deceptive because like the Emperor’s New Clothes – it is just more of the same wrongdoing. ME advocates need to rigorously fight CDC’s dangerous recommendation of GET and their use of the vague IOM/SEID definition which will result in the burial of the distinct disease myalgic encephalomyelitis.

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My thanks to advocate Eileen Holderman for her consultation on this blog post.

“Hypocrites get offended by the truth.”
― Jess C. Scott

On May 17, 2018, I wrote a blog about the actions by the organizations MEAction, Solve ME/CFS, and MassCFIDS to introduce a Senate resolution ( S.Res.508 – dated May 15, 2018) for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day. ME advocates and the organization MEadvocacy strongly objected to the deceitful inclusion, by the organizations mentioned above, of the Institute of Medicine (IOM) recommendations into the Senate Resolution.

The three organizations purportedly representing the ME community are keenly aware that a significant segment of the Myalgic Encephalomyelitis (ME) community strongly disapprove of the IOM recommendations (see details of HHS’ charge to IOM and the resulting recommendations here) yet, chose to inject the IOM recommendations in the Senate Resolution.

In response to multiple objections in June 2018, the three organizations published a clarifying letter to the community about the “confusion” regarding the language in the Senate Resolution. In their letter, they claim that “one line was inadvertently changed” which became a cause of “confusion and upset” in the community. Their intent, they explain, was to get Senators on record as:

Double Speak:

Language in official government documents are precise and are read at face value. The intent in the minds of those who pen the wording is inconsequential. Congressional representatives, politicians and everyone reading the document will come to the false understanding that the IOM Report is commendable and its recommendations are admirable.

The two points of “intention” mentioned above were never part of the recommendations of the IOM Report (as seen here). Additionally, to recommend an entire report with the extrapolating of one specific sentence in a 282-page document is inane, especially, when the resulting recommendations are inaccurate and damaging.

The IOM Report was not charged with recommendations regarding research. It was HHS’ P2P work which produced their own report on the needs of research in ‘ME/CFS’ – not the IOM. The IOM’s charge was limited to the diagnosis of the disease.

The Solve ME/CFS/MEAction/MassCFIDS letter further states:

“Our intent was not to support the IOM’s suggested name change to SEID or the IOM diagnostic criteria“

Double Speak:

The name change to SEID and the new IOM diagnostic criteria were part of the actual recommendations of the IOM Report. How are we to believe that organizations who claim to represent the community of people with ME (pwME) get that most important fact wrong?

It is hypocritical for these organizations to state that they are not supporting the IOM diagnostic criteria when in fact, they have been and are continuing to aid the Centers for Disease Control and Prevention (CDC) in adopting, implementing, educating and disseminating the IOM diagnostic criteria!

In conclusion, the three organizations want to be “extra clear”:

“Neither our advocates, our organization, nor members of the Senate are pushing for the NIH to rename the disease nor to adopt the diagnostic criteria.”

Double Speak:

Do you see what they did here? Reread it. They are saying that they are not pushing the NIH …(NIH the research agency of HHS) to adopt diagnostic criteria! It is the CDC who forced the IOM/SEID criteria on us, despite worldwide protests against it. And it is the CDC who have adopted, implemented and disseminated the IOM/SEID diagnostic criteria – not the NIH.

ME advocates reject the IOM recommendations and therefore reject the entire report the work was based on. In its opening paragraph, the IOM authors stated: “Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious debilitating conditions that impose a burden of illness on millions of people in the United States and around the World.” They qualified that ME is not CFS. Later in the report, the authors stated: “The Committee deemed the term “myalgic encephalomyelitis,” although commonly endorsed by patients and advocates, to be inappropriate because of the general lack of evidence of brain inflammation in ME/CFS patients, as well as the less prominent role of myalgia in these patients.” The IOM report distinguished that the entity they were defining was not ME.

The rebranding attempt with the name SEID was ill-received by the majority of the community, and those who have published works vetting the IOM/SEID criteria and comparing to past definitions have agreed that it is a weak, overly broad criteria – even more general than Fukuda and not descriptive of ME (see Jerrold Spinhirne’s Note here).

Betrayal

The three organizations who have elected themselves to represent #pwME – in actuality are not. If they were serving pwME, they would push for the criteria authored by ME experts – the 2011 International Consensus Criteria (ICC) for diagnosis and research – not the vague ‘fatigue’ IOM/SEID definition.

It is hypocritical to brand yourself as representing one disease, yet push and aid for adopting a different entity. Long-standing ME advocates and pwME understand the distinction but, those who are newer to the community do not – and this deception is grossly misleading and harmful. The three organizations are in actuality aiding the CDC by serving on workgroups to facilitate the adoption, dissemination, and education of the IOM/SEID diagnostic criteria – yet they state they are not supporting it.

The language used by MEAction Network, Solve ME/CFS Initiative and MassCFIDS/ME & FM Association in their letter to the community is what we have become accustomed to from the government health agencies for three decades with their deliberate deception and harm inflicted on the ME community. The fact that these three organizations who purport to represent the ME community are employing the same government tactics is appalling and harmful.

The ME community has experienced the disastrous ill-effects of using obfuscating, ‘fatigue’ based criteria for more than three decades. We will not stand by in silence for more of the same.

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“ME/CFS” advocacy is fractured. I would prefer that was not so and that every advocate subscribed to the same advocacy philosophy of holding the government accountable.

For example, I strongly object to welcoming the CDC, with its atrocious “CFS” history and no genuine course change, to the fold. Until this day, the CFS Toolkit (touting GET and CBT) has not been recalled. Surely, this must be the lowest of bars. It shouldn’t be the only condition, but it seems like a “must have” condition for considering the possibility that the CDC has turned over a new leaf, let alone for promoting any CDC efforts. It makes my toes curl to see the intramural NIH study cheered on even though one of NIH’s ME somaticizers Dr. Brian Walitt is in charge of it. But what concerns me the most is SEID, the new definition for CFS and ME by the IOM (now called the National Academy of Medicine). The IOM delivered a criteria that captures a more heterogeneous patient group than the CDC’s Fukuda definition, with complex harmful consequences.

These and other positions are held by many seasoned and accomplished advocates who have been in the trenches for a long time, many for decades. They may not talk about it, but typically they have paid the price of becoming much sicker, severe even, for their advocacy efforts.

Reminiscent of Larry Kramer, their warnings and objections are not always popular with advocacy newcomers who dangerously haven’t familiarized themselves with ME history and policy implications and whose enthusiasm has them convinced that quick results are just around the corner, now that they have entered the arena. They skip right by finding out what has been tried in the past, what has worked and what hasn’t, what government tactics and strategies have been used etc. Hope is a hard commodity to come by as an ME patient. That coupled with a novice’s passion makes it easy to dismiss the warnings of those who have seen it all before.

Even though many of the veterans have considerable expertise to offer, even advanced degrees, none of them have ever gotten paid by fellow patients nor would they consider pursuing salaries or reimbursements of personal luxury items from impoverished patients. The past contributions of these longtime advocates have largely been erased. Their current efforts are either hijacked or misconstrued because genuinely understanding them requires to look past the shiny objects the government has strewn along our path. It doesn’t help that the veterans’ policy positions, despite being exceptionally well considered and based on extensive experience and analysis, are typically not covered by the media. This is largely due to the fact that all they have is their frail ME bodies whereas the other camp has a substantial and well-organized fundraising machinery and advocacy platform allowing for healthy paid employees to promote its agenda. The playing field is anything but level.

So yes, it would be easier if the ME community presented a united front. But easier means neither desirable nor healthy. What is not only unhealthy but wholly toxic and unsafe, is to label the criticizing of a position a personal attack on those holding the position. There is a difference between ad hominem attacks and valid criticism of an advocacy approach, especially when the advocacy approach is pursued by influential figures or advocacy organizations. Falsely ascribing the former to the latter is an unacceptable and disgraceful attempt to quiet dissent, to silence dissidents by shaming them. Nobody’s positions or actions are beyond reproach, especially not those of advocates in influential roles. Seeing the victim card played routinely by and for those in such influential positions has thoroughly worn thin. Emotional manipulation at the expense of other patients has no place in a disabled community. Many of us have put everything on the line. We are all sick. We all have relapses and other crises. Not everybody may live tweet or otherwise mention them, but that shouldn’t tilt the playing field even further.

What has happened to advocacy in ME? It seems that the old “inside voices” campaign of the CFIDS Association of America (now called the Solve ME/CFS Initiative) has been rebooted. Ironically, that triggers a mob mentality at every hint of disagreement with well-funded organizations or well-connected individuals with unfettered access to a large platform. This is distressing, especially so because it eerily resembles an HHS action plan from a few years ago to silence critics. This reflexive shaming of independent advocates and the organization MEadvocacy for even the slightest challenge of various initiatives, no matter how ill-advised the initiatives are, must stop. We have reached a point where even calling out the CDC or NIH for their lethal wrongdoing is being berated and dismissed without an earnest consideration of the facts, complexities and probable harms. This is madness. A worldwide advocacy monopoly that shuts down any dissenting voices only serves the government’s agenda. This community desperately needs all of its voices instead of a “smallest common denominator” approach. The latter has led to a considerable easing up on the government in the last few years.

Among the many advocacy battlefields, most of the seasoned independent advocates consider the definition and the name to be the critical issues that will determine the fate of ME patients. Those two issues have a long and complex history. The way I see them discussed is often treacherously simplistic, employing facile arguments. One cannot wing getting involved in these intricate discussions without risking considerable harm to the community. Instead, it requires doing the laborious homework. If we don’t insist on the proper definition (International Consensus Criteria – as developed and recognized by our ME experts) and the proper name (Myalgic Encephalomyelitis, recognized by the WHO), we will enable the government to condemn ME patients to eternal suffering.

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Since the Lake Tahoe outbreak of the distinct neuroimmune disease myalgic encephalomyelitis (ME), the US Centers for Disease Control and Prevention (CDC) has extended all their efforts in minimizing, conflating, misbranding, wrongly defining the disease in an attempt to bury the facts and reality of this severely disabling chronic disease affecting an estimated million American men, women and children. The purpose of their malfeasance is to evade and deflect responsibility for this burdened pandemic.

One of CDC’s methods of cover-up is to refuse to adopt and to diverge from the authentic criteria for ME authored by international ME experts (Ramsay’s, CCC & ICC). They have managed this by producing and/or acquiring faulty, overly broad criteria that do not describe the actual immunological, neurological and infectious nature of the disease. Their latest offense is the acquisition of the IOM/SEID criteria. They have used the Institute of Medicine (IOM) (now called National Academy of Medicine) which is perceived to be an independent private organization when in effect most of their work is paid for by HHS – not exactly an unbiased partner. The charge and parameters of the IOM work were set up and controlled by HHS (leaving out many studies into the immunological and infectious nature of the disease) They have done this in an attempt to give their re-branding and redefining effort false legitimacy. In actuality, this new criteria is yet another vague, ill-defined, fatigue-based definition.

Organizations who claim to represent #pwME like SMCI and MEAction have banded together with the CDC to aid in legitimizing this bad definition which is overly broad and does not define ME.

They have done this by:

Sponsoring and arranging apress briefing immediately after the release of the report.

Collaborating with CDC with their Technical Development Workgroup (TDW) to aid in embracing and inscribing the faulty definition to the CDC website (list of participants). MEadvocacy, the patient organization representing #pwME issued ablogexplaining why they opted OUT of this workgroup.

Collaborating with CDC to work on the new toolkit for healthcare providers and medical continuing education to teach and disseminate the IOM/SEID criteria.

Their latest “service” to the CDC is with their guileful inclusion of the ‘consideration of the recommendation from the IOM relating to ME/CFS’ in their proposed Senate resolution S.Res.508 – dated May 15, 2018, introduced by Senator Markey and co-sponsored by Senators Collins, King, and Van Hollen to raise awareness about ME/CFS of the following language:

“Resolved, That the Senate

…

(3) encourages—

(A) the National Institutes of Health and other Federal agencies to work with experts, stakeholders, and individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to—

(i) consider the recommendations of the National Academies of Sciences, Engineering, and Medicine relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

…”

Remember the National Academies of Sciences was formerly called the “Institute of Medicine”. So, the Resolution which was drafted by MEAction and SMCI includes a push to implement the IOM recommendations. Since these organizations were the ones who suggested the draft of the Resolution, they could have added anything, yet they proactively suggested adopting the IOM recommendations. [edited to include exact wording of the specific part of the Resolution and to clarify]

These are the IOM recommendations they are alluding to:

1 – Physicians should diagnose ME/CFS (with IOM criteria), and a new ICD code should be assigned. (please note that “SEID” or “ME/CFS” has no US ICD classification or code. The ill-defined conflated term violates ICD rules by combining diagnoses from different ICD sections).

2 – HHS should develop a toolkit for medical practitioners (based on the IOM).

3 – A multidisciplinary group should reexamine the IOM criteria when firm evidence supports modification, or in no more than 5 years.

4 – The committee recommends that this disorder be renamed “systemic exertion intolerance disease” (SEID). SEID should replace ME/CFS for patients who meet the criteria set forth in this report.

The above Senate Resolution is in recognition of May International Awareness month for the disease. It details some basic stats (some faulty one like women are 4 times more likely to get the disease and neglects to include the cluster outbreaks and blood donation bans due to infectious components and/or etiology as well as state this disease kills patients), the financial burden and the general need for funding, medical care, and education. Why not just stop it at that? Why did MEAction and SMCI insert the IOM recommendations in this resolution – except for aiding CDC in their burial of the disease, myalgic encephalomyelitis?

Myalgic encephalomyelitis is not chronic fatigue syndrome nor is it systemic exertion intolerance disease nor is it chronic fatigue. One cannot claim to represent the entire community when, in effect, not only are they advocating for and promoting recommendations for faulty criteria but, they are aiding in the full burial of the distinct disease ME.

NOTHING ABOUT US WITHOUT US

Organizations and advocates who promote the IOM criteria DO NOT represent #pwME-ICC. Falsely branding themselves as ME organizations and advocates is deceptive and harmful to this severely ill patient population. Their attempt to speak for #pwME-ICC when approaching government officials or serving on government or private committees concerning the disease is not authorized by #pwME-ICC. They are in effect aiding CDC to conflate and confuse while attempting to bury ME-ICC.

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The Jewish Holiday of Passover celebrated this past month, as it is every spring, commemorates the liberation of the Israelites from slavery in Egypt. Its feature is the Seder when family and friends join together for an elaborate festive meal with specific customs and rituals. For many families, one of the highlights of the Seder night is the Mah Nishtanah, the “four questions” recited by the youngest members of the family. The questions are about the difference between this night as opposed to all other nights and its purpose is to stimulate interest and thought about the history and traditions involved with Passover.

Isidore Rabi, a winner of a Nobel Prize in physics, was once asked why he became a scientist. He replied, “My mother made me a scientist without even knowing it. Every other child would come home from school and be asked, ‘What did you learn today?’ But my mother used to ask a different question. ‘Izzy,’ she always used to say, ‘did you ask a good question today?’ That made the difference.”

In the tradition of the questions of ‘mah nishtanah’, I would like to stimulate thought about the history, actions, and state surrounding the acquired neuroimmune disease Myalgic Encephalomyelitis (ME) which manifests itself in epidemic and sporadic form and affects an estimated million American men, women, and children. There is no FDA approved treatment to date regardless of the fact that it leaves the majority of sufferers disabled from work, housebound or bedbound – some for decades.

From the beginning, when representatives of the CDC were called down to investigate the outbreak at Lake Tahoe in the 1980’s, CDC and other US health agencies have mistreated this disease which has resulted in incalculable harm to the million American men, women and children with ME. Every item questioned below are actions the government has taken or refused to make based on their attempt to disappear the reality and facts of the real acquired neuroimmune disease ME.

Following the form of ‘mah nishtanah’ questions as in “on all other nights we eat leavened or unleavened bread; tonight we eat only matzah”, here are the questions for ME.

Mah Nishtanah ME Questions

Why is it that:

All other complex chronic diseases are named with people’s names, geographical locations or distinctive feature; this complex chronic disease is falsely branded “chronic fatigue syndrome” – after a common symptom of fatigue? (see how diseases are named here)

All other complex chronic diseases are defined by non-government medical experts in that specific disease; this complex chronic disease is repeatedly ill-defined by the government (CDC)? (see Frank Twisk paper here)

All other complex chronic diseases are taught in depth in medical and nursing schools; this complex chronic disease is either not taught at all, or mentioned dismissively?

All other complex chronic diseases have a medical expertise assigned to them with ample nationwide practitioners caring and treating patients; this complex chronic disease does not have a distinct medical expertise assigned to it and has very few knowledgeable doctors caring and treating patients?

All other complex chronic diseases are placed in a specific NIH Institute who claims responsibility for funding research for it; this complex chronic disease has not been placed in any particular NIH Institute? (it is currently situated in the Office of Research on Women’s Health which has no specific budget set aside for research)

All other complex chronic diseases that render patients unable to of a fair chance to secure Social Security Disability payments; this complex chronic disease has a high rate of denial for SSD, regardless of the severity of symptoms and the disabling nature of them?

All other complex chronic diseases that appear in epidemic form are studied for their infectious nature; this complex chronic disease which has appeared in over 50 outbreaks worldwide since the 1930’s (see list here) yet its infectious nature is mostly ignored and covered up by CDC?

All other complex chronic diseases have appropriate recommendations for FDA approved treatments; this complex chronic disease has no FDA approved treatments and has recommendations for treatments that are harmful to people with ME (graded exercise therapy [GET] and cognitive behavioral therapy [CBT])? (see a warning about GET from Workwell Foundation here)

All other complex chronic diseases that are biological in nature are described, defined and studied as a biomedical disease; this complex chronic disease is falsely labeled, defined and studied as a psychosomatic condition?

All these discrepancies and discriminatory actions by HHS are not coincidental. They all serve the purpose to minimize, marginalize this disease and deflect responsibility from the health agencies whose charge it is to “for protecting the health of all Americans and providing essential human services, especially for those who are least able to help themselves.”

The month of May is awareness month for ME. It is time to ask the hard questions such as:

Why have the government health agencies ignored, neglected and covered up this severely disabling acquired multisystem disease for decades?

Why did the government health agencies enable the psych lobby to highjack this disease when they have known for decades that this is a biomedical disease?

Why are they so reluctant to properly name and define this disease as recommended by the medical experts and community?

How much money has the government withheld with their refusal to properly fund this disease and by their continuous denial of disability coverage?

This May patients and advocates need to ask deep-seated questions and demand answers. With the insistence and demand that the proper name (myalgic encephalomyelitis) with the appropriate definition (ICC) be used, it will force the government to finally distinguish ME from fatiguing and psychosomatic conditions. It is with this most important distinction that meaningful change will take effect.

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I wish to thank advocate Eileen Holderman for her consultation with this blog post.

In 2012, The U.S. Centers for Disease Control and Prevention (CDC) instituted the “ME/CFS Stakeholder Engagement and Communication conference calls (SEC)” (previously called PCOCA) series with the stated purpose of sharing information with those interested in ME/CFS as part of their regular outreach and communications efforts. These calls are billed as a form of engagement with the community, but this is just by name – not reality.

CDC’s Phantom Engagement

CDC’s claims of transparency and stated desire to engage with the ME/CFS community is debunked by their consistent underhanded actions. Their “engagement” call is, in fact, an hour-long one-sided communication. CDC placed all callers – a group of very sick disabled people – in a silent mode for the hour-long call. CDC falsely alleged they can’t take live calls when many large government events take live questions all the time.

CDC’s 60-minute call devoted 50 minutes to their invited speakers – leaving only a couple of minutes in the end to cover the many crucial questions sent in by ME patients and advocates. CDC kept us in the dark as to whose questions they selected – never giving us the actual names.

CDC refuses to make the recordings available on their website, even though they tell us that they are being recorded. CDC is very well aware that this is a community of people who are severely sick and it is too taxing for them to listen in at the appointed time and for a full hour-long call.

Conclusions about CDC’s lack of engagement and consideration of people with ME:

CDC stages the call so that they are in complete control of the narrative

CDC manipulates the timing of the call as to leave minimal time for public questions

CDC refuses to take live calls because they are apprehensive of challenging questions

CDC is more concerned about the perception of engagement than an actual one

CDC is not worried about federal rules that call for accommodations for the disabled

CDC does not want a record of the meeting because they want to avoid activists’ criticism

November 2, 2017, CDC Call

The latest CDC call took place on November 2, 2017. The topic was:“Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS” with Drs. Lucinda Bateman, Ellen Clayton, and Peter Rowe. All three speakers served on the IOM panel to create new government-sponsored criteria and a new name – systemic exertion intolerance disease (SEID).

Background of the HHS/IOM Implementation and Stakeholders’ Protests

October 2012

In October 2012, the Chronic Fatigue Syndrome Advisory Committee (CFSAC) sent the following recommendation to Dr. Sebelius, the Secretary of The US Department of Health and Human Services (HHS): “CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes.”

HHS highjacked and distorted CFSAC’s recommendation, turning their backs on their own advisory committee of experts. In Septemeber 2013, HHS secretly contracted, sponsored and charged the Institute of Medicine (IOM) to create yet again, another government-controlled clinical definition and a new name for the disease. Myalgic Encephalomyelitis (ME) stakeholders were outraged at HHS’ deception and exploitation. Fifty International ME researchers and clinicians wrote an open letter to Secretary Sebelius urging her to stop the IOM contract and to adopt the 2003 Canadian Consensus Criteria (CCC) for clinical and research purposes. Sixty six ME advocates worldwide signed a letter in support of the Experts’ Letter. ME patients sent letters to their congressional representatives with the same message – stop the IOM, adopt the CCC.

But, HHS continued to disregard the voice of the international ME community and ignored the continued protests taking place such as a new letter dated December 2013 signed by 197 professionals and advocates with detailed objections to the IOM process. Advocates also continued their protests in the form of public testimonies at the IOM January 13, 2014, open meeting (see article here).

In February 2015, the IOM panel published their report including new clinical criteria and a new name – systemic exertion intolerance disease (SEID). The new criteria have been heavily criticized by CFSAC, experts, advocates, and patients for:

no list of exclusions

no objective tests and measures

not including exhaustion of the central nervous system after minor physical activity

omitting core symptoms such as pain and immune dysfunction

the core symptom of cognitive dysfunction is only listed as an option.

signs of the infectious nature of the disease such as flu-like symptoms, sore throat, swollen lymph nodes and headaches are absent

no autonomic and neuroendocrine symptoms

no specificity toward different stages and levels of the disease

In the preface to the ICC, its authors state: “There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters skepticism, and wastes limited research monies.”

The new IOM clinical criteria are just another in the string of CDC vague, overly inclusive criteria which have and will continue to confuse and hinder progress in the science and understanding of ME. In Dr. Leonard Jason’s estimation, the IOM criteria are even broader than the previous CDC criteria – the Fukuda definition.

Alarmingly, the new clinical criteria are now being recommended and used for research. Dr. Bateman, who served on the IOM panel to create the new vague clinical criteria, has stated she will be using the IOM definition in her studies at the new NIH ME/CFS Collaborative Research Centers – disregarding the false promise that it will only be used for diagnostic purposes – never for research!

Pushing and Defending the IOM Criteria

Dr. Lee, the previous DFO of CFSAC, stated at one of their meetings – ‘it is not the job of the government to create definitions for diseases, it has to come from the community of experts.’ Yet, since the 1980’s the CDC has perpetually ignored the name and criteria authored by experts and has produced one faulty definition after another (Holmes, Fukuda, Fukuda, and IOM).

ME experts have developed and have successfully been using the CCC and the International Consensus Criteria (ICC) for years in clinical practice and for research. It is the government who has repeatedly refused to do so – opting instead to use their own faulty CDC definitions.

CDC refuses to adopt the ME experts’ definitions citing that it is too hard for clinicians to understand. Ironically, Dr. Bateman defended the weaker IOM definition with its 280-page report! She advised clinicians to look at selected chapters of the report to find what should have been part of the core symptoms of the disease. In reality, reinforcing the fact that the new criteria are inadequate and impractical.

CDC’s patient engagement call was an epic fail. It was a long infomercial for the faulty CDC/IOM criteria. It was a farce as far as engagement is concerned – there was none! They refrained from making accommodations to a community of disabled and cognitively challenged people. They falsely claimed they could not take live questions. They spent a few minutes, in the end, answering four questions for which the origin is unknown.

CDC did not answer these questions – among many others:

Question for Dr. Bateman – from Gabby Klein

You were an author of the 2011 International Consensus Criteria (ICC) which recommended removing CFS from ME. The ICC states the following: “Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric”.

You were an author of the IOM criteria as well which stated regarding coding: “A new code should be assigned to this disorder in the International Classification of Diseases, Tenth Revision (ICD-10), that is not linked to “chronic fatigue” or “neurasthenia.”

Since the IOM report did not ask to replace the WHO classification of ME, do you, therefore, agree that the IOM criteria do not define the disease Myalgic Encephalomyelitis (ME)?

Question for Dr. Bateman – from Colleen Steckel

The IOM panel was charged by its sponsor, HHS, to ”recommend clinical diagnostic criteria that would address the needs of healthcare providers, patients, and their caregivers.” In addition, in an interview with Phoenix Rising regarding the IOM criteria, Dr. Bateman stated: “SEID criteria are intended for current use, for doctors to do better at making the diagnosis in a clinical setting. There was no discussion of anything but using them for this purpose.”

Yet, NIH is currently recommending the use of the IOM criteria for their new ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) competitive consortium grants. Can you explain why new clinical criteria will now be used for research?

The expert criteria ICC would ensure the disease myalgic encephalomyelitis would be the focus of any studies.

Question for Dr. Unger – from Colleen Steckel

Are there any plans to address the concerns raised by MEadvocacy.org in their recent blog labeled “CDC’s Website Revision is No Reason for Celebration”?

Patients continue to be told by doctors that this is just a fatigue illness and refuse to look into immunological, cardiology, and neurological issues. Patients continue to fend for themselves with little care from mainstream doctors. This continues to lead to despair and suicide within the community. The CDC needs to do much more in order to change this reality.

Questions to Dr. Unger – from Eileen Holderman

What are the official case definitions for ME that CDC endorses for research and clinical?

As former CFSAC member and Chair of Subcommittee for CDC Website Review, when will CDC take down Toolkit and Resource Guide from the CDC website Stacks?

Questions from Guido Den Broeder

(1) Will you please once more distinguish between ME and CFS, as you did before?

Myalgic encephalomyelitis (at G93.3 in the ICD-10) is a specific post-viral brain disorder. Much is known about its causes, diagnostics, and treatment.

Chronic Fatigue Syndrome (R53.82 in the ICD-10-CM) is a term for unexplained fatigue and malaise. It is not a disease. In clinical practice, patients with a variety of diseases start out with a diagnosis of CFS, even though this is not a clinical diagnosis.

(2) What are you going to do to prevent ME?

Will Coxsackie B be added to polio vaccinations?

Are you going to follow mononucleosis patients and test their immune system for post-mono abnormalities?

(3) What are you going to do to reduce the clinical use of the CFS label?

Will you increase awareness among physicians of diseases such as ME, EDS, Lyme, Hashimoto, etc.?

Are you going to promote the clinical use of the SEID label as defined by the IOM?

These are only some of the many questions from patients and advocates that CDC has not answered!

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Methods of Silencing Dissent to Control a Specific Agenda

Globally, government agencies and officials as well as private sector companies, and organizations use known astroturfing and silencing methods to achieve their intended goals. They use media to spread propaganda to manipulate opinions. They employ specific tactics to squash dissent to institute their desired agenda.

In the myalgic encephalomyelitis (ME) community, this method of controlling a specific intention is used by government health agencies, medical interest groups, and those supporting them. They advance the false narrative that ME is not a distinct disease but, a collection of fatiguing conditions. They also perpetuate the myth that ME is imagined – a functional somatic condition.

This government deceit harms people with ME (pwME). The underhanded conflation of ME with chronic fatigue syndrome (CFS), chronic fatigue (CF), and psychosomatic conditions results in falsely depicting the disease as a benign condition, possibly just in the mind of the patients. The medical community has therefore in the main dismissed this ‘vague condition,’ neglecting to care or study it.

Those whose interest lies in perpetuating this myth because of financial benefits or other motives use established methods to advance their biased goals by spreading misinformation and falsely accusing those who dare to speak out about the malfeasance.

Methods of Silencing a Group of Activists

Ron Duchin, research analyst at Mongoven, Biscoe & Duchin Inc., in Washington DC,created and utilized specific techniques to break up activists groups who were fighting for social justice such as environmental groups, animal rights groups and consumer affairs groups. His famous legacy was breaking up civil rights activists groups fighting the tobacco industry. He later used this plan advising other industry giants in how to fight any dissent which was adversely affecting their objectives.

Duchin explained that activists fall into four categories: radicals, opportunists, idealists and realists, and that a three-step strategy was needed to bring them down.

First, you isolate the radicals; those who are vocal in their desire to change the corrupt system and promote social justice. Then use methods of character assassination to discredit them – such as exaggerations, lies, trumped up charges to marginalize them.

Second, you carefully cultivate the idealists; those who are quieter and are not as direct in their methods and objectives as the radicals. You do this by gently persuading them that their advocacy has negative consequences for some groups, thus transforming them into realists.

Finally, you co-optthe realists (the pragmatics willing to work within the system) into compromise. “The realists should always receive the highest priority in any strategy dealing with a public policy issue . . . If your industry can successfully bring about these relationships, the credibility of the radicals will be lost, and opportunists can be counted on to share in the final policy solution.” Opportunists, those who are motivated by power, success, or a sense of their celebrity, will be satisfied merely by a sense of partial victory.

Astroturfing Methods to Manipulate and Control an Agenda

What is astroturfing? (Astroturf and manipulation of media messages by Sharyl Attkisson – see video here)

Astroturfing is the attempt to create an impression of widespread grassroots support for a policy, individual, or product, where little such support exists. Multiple online identities and fake pressure groups are used to mislead the public into believing that the position of the astroturfer is the commonly held view. The goal is to neutralize any opposition.

Tactics:

give the impression that there is widespread support for or against an agenda when there’s not

seek to manipulate and change opinions by making some feel like outliers when they’re not

seek to malign those who openly disagree with the intended view

attack those who publish articles they don’t like or whistleblowers who tell the truth

intentionally shove so much confusing and conflicting information into the mix that you are left to throw up your hands and disregard all of it, including the truth

How to Recognize Signs of Propaganda and Astroturfing

use of inflammatory language such as crank, quack, nutty, lies, paranoid, pseudo and conspiracy theorists

personal attacks on individuals and organizations surrounding an issue rather than addressing the facts

reserve all public skepticism for those exposing wrongdoingrather than the wrongdoers

instead of questioning authority, question those who question authority.

Methods of controlling an agenda and minimizing dissent in the ME Community

Defining the disease with government-produced vague criteria which include many who suffer from fatiguing, psychiatric, psychological and other conditions, – with the aim of burying the neuroimmune disease ME. Then, accuse #pwME of somaticizing and catastrophizing.

Quieting criticism by spreading rumors that the patients are an “angry and crazy” group – rumors that are never substantiated with evidence – to legitimize their own biased objectives and to dissuade clinicians and researchers from treating patients and studying the disease.

Media articles that miseducate about the disease and misrepresent the community such as this article in the Guardian titled “Chronic fatigue syndrome researchers face death threats from militants.” The author uses classic astroturfing methods when writing: “In addition, activists – who attack scientists who suggest the syndrome has any kind of psychological association – have bombarded researchers with freedom of information requests, made rounds of complaints to university ethical committees about scientists’ behaviour, and sent letters falsely alleging that individual scientists are in the pay of drug and insurance companies.” Notice the inflammatory language: “attack” – for disagreeing; “bombarded” – for requesting information from the government as if that is a terrorist act; “falsely alleging” – when there is actual evidence.

Mis-educating by highlighting the ‘fatigue’ element of the disease (even though it is just one symptom of many in this systemic disease). Choosing to educate the misconception that this is a condition of the mind even though science proves otherwise. Encouraging harmful treatments such as GET and CBT which still appear on CDC’s website (see toolkit and guide to medical professionals) Educating with overly broad, inaccurate criteria as in the revised CDC website promoting the IOM criteria. (See “CDC’s Website Revision is No Reason for Celebration”)

Marginalizing or disparaging clinicians and researchers who show interest in treating or studying the disease, by denying their applications for government funding and refusing their requests to serve on federal committees. Dr. Jose Montoya, a professor at Stanford University and one of the leading ME clinicians and researchers today, told The Guardianwhat his mentor told him when starting his work with ME patients: “You are committing academic suicide. You’re turning your career into a mess.”

Giving the illusion that patients have a platform for input and engagement when in reality their voice is consistently ignored. HHS creates puppet committees and working groups, such as the Chronic Fatigue Syndrome Advisory Committee (CFSAC) and various working groups yet, very few (if any) of their members’ recommendations are implemented. Stakeholders’ oral and written testimonies to CFSAC are sought but readily ignored and dismissed.

Threatening those who dare to ask critical questions – as in the threat of eviction of three CFSAC voting members – two of which went public – Eileen Holderman (patient advocate)and Dr. Mary Ann Fletcher (scientist) (See video here, letter from advocates calling for an investigation here).

Rewarding those who support the biased government agenda by giving them preferential treatments, whether with a coveted seat at the table or with funding opportunity perks. Some in the co-opted interest groups aid the government with attempts to silence opposing voices by telling them not to complain and to ignore the malfeasance.

Rejecting grant applications to fund biomedical research, in deference to studies using a psychological/psychiatric view. World renown ME investigators, such as Drs. Ronald Davis, Ian Lipkin, Nancy Klimas, Jose Montoya, Mark Davis and Robert Naviaux have each received rejections for their research grant applications from NIH. Yet, funding studies by Psychologist Fred Friedberg, Ph.D. such as home-based management are accepted (See study).

As currently seen with the University of Bristol Professor Esther Crawley’s upcoming TEDx talk “Dare to Disrupt”, the desire by these groups to propagate their false narrative about ME is powerful. In her write up on TEDex website, Crawley writes: “I dare to disrupt because …We need to disrupt views of this illness.Those who are ill with CFS/ME do not have a voice – they are too unwell. We need to provide their voice, and we need to speak up about this illness. Because we, as a community, as a society, as friends, as neighbors and as parents should look after children who suffer.”

Yet, the ME community did not choose Crawley to be their voice. The opposite is true. Esther Crawley is a proponent of the unscientific GET, CBT, and lightning process treatments in children with ME and is involved in studies using these harmful therapies. She was an author on a study which promoted the diagnosis of pervasive refusal syndrome (PRS) for children with severe ME. UK patients and advocates have spoken out against these studies taking place because of their potential for harm. Crawley fought back by using the astroturfing method of character assassination. She spread allegations that she was being attacked and harassed by ME patients. These charges were debunked by Tyme Trust who obtained FOI requests from the University which revealed that no reports of harassment were made (See Adam Lowe’s article, “Esther Crawley claims harassment, university has no record”).

The nefarious methods of control by those with a false narrative about myalgic encephalomyelitis and their supporters will continue. To prevent the disappearing of ME, we need to recognize and expose these treacherous acts. Our advocacy efforts should focus on demanding the use of proper criteria for diagnostic and research purposes ( ME-ICC criteria and ME-ICC Questionnaire), and for appropriate NIH funding ($250mil a year in the US) to effectuate impactful studies leading to an acceptable biomarker as well as FDA approved treatments for #pwME.

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Please note – the name chronic fatigue syndrome (CFS) is used on this blog only because that was the name used in the article it refers to. I and other ME advocates promote the use of the proper name myalgic encephalomyelitis (ME) for this complex neuro immune disease.

I have seen articles and blogs widely shared and recommended by patient advocates and organizations which appear on the surface to be factual and affirmative yet, on close inspection contain misinformation about myalgic encephalomyelitis (ME) and even include recommendations for harmful treatments such as graded exercise therapy (GET) and cognitive behavioral therapy (CBT).

One such example is the September 2017 article in PTinMotion – “The Real Story About Chronic Fatigue Syndrome” by Eric Ries. Ries tells the story of Nicole Rabanal, a ‘chronic fatigue syndrome’ (CFS) patient, who is also a physical therapist (pt). Rabanal was a previous skeptic of CFS which she believed to be a catch all term used when medical practitioners did not know what is wrong with a patient. But, when she, herself, became sick in 2014 – suddenly feeling like she was “hit by a truck” and eventually receiving an official diagnosis of CFS – she becomes a believer and understands that this is a real organic disease.

Rabanal, having worked as a physical therapist for 25 years uses her pt skills to treat herself and then other CFS patients as well. She demonstrates the importance of listening and understanding the signs of when one is pushing beyond their limit and recommends appropriate exercise and stretching routines to avoid harmful effects.

Rabanal explains that due to her disease she can only work two hours at a time with modifications, “I sit a lot, and lean or move to help manage my orthostatic intolerance—which does not allow me to stand still, unsupported, for more than 5 minutes.” These physical adaptations and pacing is a lesson for every patient dealing with this disease because overdoing it has damaging, at times permanent, consequences.

But, Rabanal continues with damaging advice to other physical therapists. Her message about recognizing and assigning patients a CFS label using a simple list of symptoms taken from the IOM criteria has dire consequences. She doesn’t recommend that PTs send patients who they suspect of suffering from the disease to a specialist for a full work-up with tests to exclude possible differential diagnoses, to enable a proper diagnosis.

This has been one of the many reasons why so many in the ME community are opposed to the use of the IOM diagnostic criteria. HHS charged an IOM panel to create yet another government sponsored definition of the disease with a simple checklist of a few symptoms and no exclusions. This will cause a major overdiagnosis and will further murky the waters of what this disease truly is. That is why ME advocates and ME organizations prefer and recommend the International Consensus Criteria (ICC) which were created by ME experts for diagnostic and research purposes.

The piece continues its decline when the author contacts other PTs and quotes their views about CFS and how PT’s should treat them. Although the report warns of PACE’s pitfalls recommending GET and cognitive behavior therapy (CBT), it goes on to recommend both of these (first in hidden than in overt forms).

.. “the last piece is to get patients into longer-duration activities by way of gradually building on anaerobic training—while recognizing that the prognosis for full functional recovery is very guarded and limited.”

“When an individual gets that super-malaise from exertion, that can foster kinesiophobia, or fear of movement,” .. “If you can empower the patient to find movements that don’t trigger that, while correlating to patient-identified problems and impairments that you’ve noted, your therapeutic alliance with that patient improves, along with the prognosis“.

The article goes on to portray CFS patients as ‘depressed’ and ’emotionally charged’ (these are common code words used by psych lobby in an attempt to highjack organic disease)

“Ninety percent of our patients with chronic fatigue syndrome start crying during this process (the interview), simply because we’re spending time with them, taking them seriously, and demonstrating that we care about them as human beings.“

“You almost need to be part psychologist, to ensure that they get the most out of their treatment sessions.”

“While her husband and kids were eating dinner, she was crying in bed by herself,”

The resource section at the bottom of the article reveals serious and damaging lies about the disease, including strong endorsements for harmful treatments that may cause permanent damage as well as death to ME patients!

Physical Therapist’s Guide to Chronic Fatigue Syndrome – This guide promotes exercise for CFS patients. There are no proper scientific studies proving that exercise is beneficial to ME patients. Moreover, science, as well as patient testimonies, have shown exercise to be harmful to patients suffering from ME

Mayo Clinic – on CFS– This site is full of outdated information and still features the faulty CDC Fukuda Criteria. For treatments, they recommend antidepressants, GET and CBT!

“Patients with CFS may generally benefit and feel less fatigued following exercise therapy, and no evidence suggests that exercise therapy may worsen outcomes. A positive effect with respect to sleep, physical function and self-perceived general health has been observed, but no conclusions for the outcomes of pain, quality of life, anxiety, depression, drop-out rate and health service resources were possible. The effectiveness of exercise therapy seems greater than that of pacing but similar to that of CBT. Randomised trials with low risk of bias are needed to investigate the type, duration and intensity of the most beneficial exercise intervention.”

There are so many articles, blogs, and papers which spread inaccuracies and misconceptions of the disease. They have caused great harm to ME patients and have given fodder to those who want to spread the lies that this is an imaginary syndrome trumped up by emotionally charged women. As advocates, we need to weed out those that will perpetuate this harm and only promote those that are factual.